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ARTS AND CULTURE

My life with dwarfism

  • 22 September 2016

 

One afternoon I feel a surge of nostalgia. I reach for old family photo albums and thumb through the contents, as if eager to find hidden clues. My eyes wander eagerly though the photos, but I am fixed on one in particular.

It's a black and white photo of me as a baby. My eyelids are closed against the dim light of dawn. All the muscles in my face are at peace, and I am deep in the throes of slumber. Dark, soft strands of hair adorn my tiny head while my skin is as smooth as a perfect peach.

I can't help notice my small elflike ears and protruding forehead, both symptoms of Seckel Syndrome, an extremely rare inherited disorder characterised by growth delays before birth.

As a baby I had a cranial operation to correct the deformity. A cut was made from one side of my head to the other. This is revealed by a scar which I carefully hide with my hair, and I have downwardly slanting eyelid folds that are slightly droopy. To promote growth I was given hormone growth tablets which I took daily.

I remember my visits to the hospital as a child, where I would be poked and prodded as I went from room to room. The hospital corridors were always cold and sterile with the distinct smell of disinfectant.

The doctor used a hammer to check my reflexes. He would tap my knees to see my leg swing up from the jolt, a sign that my reflexes were good. Then I would be scurried to another room to be measured.

At the age of nine I had my first growth spurt and towered over my peers. I was ecstatic that I wasn't the smallest kid anymore. But that was short lived. I didn't grow much more after that, as my growth was stunted. Ultimately I only grew to four feet three inches.

There are 300 types of dwarfism and the category I come under is 'primordial dwarfism', which means I have proportionate development of my arms and legs.

 

"The term midget was originally taken from the word midge, a small mosquito-like insect. While that is unflattering enough, the term dwarf invoked worse images in my mind."

 

All my family is short so I blend in with them, but stand out to everyone else. I am different enough to elicit stares, especially from children who are both fascinated and puzzled about whether

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